The increased recognition and reported prevalence of autism spectrum disorders combined with the associated societal and clinical impact call for a broad grassroots community-based dialogue on treatment related ethical and social issues. In these Stony Brook Guidelines, which were developed during a full year of community dialogue with affected individuals, families, and professionals in the field, we identify and discuss topics of paramount concern to the ASD constituency: treatment goals and happiness, distributive justice, managing the desperate hopes for a cure, (...) sibling responsibilities, intimacy and sex, diagnostic ethics, and research ethics. The members of the dialogue core committee included doctors, ethicists, administrators, social workers, ministers, disability experts, and many family members of individuals with autism who were especially engaged in community activities on behalf of their constituency, including siblings, parents, and grandparents. Our guidelines are not based on “top-down” imposition of professional expertise, but rather on a “bottom-up” grass roots attention to the voices of affected individuals and families speaking from experience. These guidelines can inform clinical practice, but they also are meaningful for the wider social conversation emerging over the treatment of individuals with ASD. (shrink)

Through the early twentieth century, asthmatics were advised to move to a more suitable climate, or to vacation in one during their worst season. In the late nineteenth century, physicians sought to quantify the ideal temperature, humidity, altitude, and pollen count to help travellers to select a suitable place, but these investigations led some physicians to question contradictions between expected and actual conditions. Given that even the best climate was not perfect at all times, and that many patients could not (...) afford to travel or relocate, a group of physicians—who came to be known as allergists—sought ways to adapt their patients to any climate through changes in their indoor environments and treatments to manage their symptoms. Their approach included changes in household design, furnishings, and cleaning techniques, especially a strict avoidance of dust, which could carry feathers, animal hair, skin debris, pollen, moulds, and an unknown ‘dust’ allergen. Air filtering and air conditioning were also promoted as ways to protect asthmatics and hay fever sufferers. These modifications of patients and their microenvironments signalled both a move away from climactic approaches to asthma and toward the sanitary, modernist home of the twentieth century. (shrink)

Barbara McClintock won the Nobel Prize in 1983 for her discovery of mobile genetic elements. Her Nobel work began in 1944, and by 1950 McClintock began presenting her work on "controlling elements." McClintock performed her studies through the use of controlled breeding experiments with known mutant stocks, and read the action of controlling elements (transposons) in visible patterns of pigment and starch distribution. She taught close colleagues to "read" the patterns in her maize kernels, "seeing" pigment and starch genes turning (...) on and off. McClintock illustrated her talks and papers on controlling elements or transposons with photographs of the spotted and streaked maize kernels which were both her evidence and the key to her explanations. Transposon action could be read in the patterns by the initiated, but those without step by step instruction by McClintock or experience in maize often found her presentations confusing. The photographs she displayed became both McClintock's means of communication, and a barrier to successful presentation of her results. The photographs also had a second and more subtle effect. As images of patterns arrived at through growth and development of the kernel, they highlight what McClintock believed to be the developmental consequences of transposition, which in McClintock's view was her central contribution, over the mechanism of transposition, for which she was eventually recognized by others. Scientific activities are extremely visual, both at the sites of investigation and in communication through drawings, photographs, and movies. Those visual messages deserve greater scrutiny by historians of science. (shrink)